Week 4 Check In

My full week sleep cycle - week 1 of induction chemo

We're now going on a full first month of induction chemotherapy. This phase is done in 4 week cycles, and we're told that there will be 4-8 cycles of this before we go for stem cell harvest at Swedish Hospital.

The nurses at Kaiser Permanente Infusion have been great. Each week it's been a different nurse to administer the treatments, and I have had two favorites, and two who were merely good. When the worst you get is "merely good," give thanks children.

We arrive, get blood taken, and go up to infusion to wait for the two chemicals to be mixed by the pharmacy. It usually takes at least an hour and a half for them to arrive at our clinic, where we've been sitting, talking and reading, and in my case, sketching and watercoloring.

The nurse comes in and you lift your shirt and expose your unflattering 65-year-old tummy and they gently pinch some of the fat there and slowly, every so slowly, push an alarming large amount (about 3 Tbsp Darzalex and 1 Tbsp Velcade) into your belly fat, creating what looks and feels like two large wasp stings.

On our first treatment we got large red reactions in the skin from the Darzalex, which turned pale quickly after taking Benadryl. That reaction hasn't happened again. A few days later, the spot where the Velcade went in got red and itchy, and is slowly fading to autumn leaf brown. Hence my earlier post Turning.

The colors are turning children. In terms of my skin, the colors of spring were the full flush of youthful skin. So beautiful to my eye then that I told myself only a blasphemer would get a tattoo - God/Universe/Whatever gave me this lovely spring skin, and what kind of sin would it be to cover that with anything else?

Forty years (and life experience later) I realized the need for new colors, so, the tatts. Those were the glorious colors of my summer skin. South Prairie browns, golds, reds. If you haven't seen it, it's here - look for the South Prairie red tailed hawk flying into the sunset.

Now the colors of Velcade autumn blossom on my belly. It's bittersweet, trust me, but it will fade. All colors fade to winter, but this autumn, my autumn, will be long and full of love. My autumn will include Thanksgiving gratitude and Christmas promise of rebirth in some other form.

But back to the topic at hand. Monday and Tuesday is the Dexamethasone train. Dexamethasone is a steroid, and you can see potential side effects here. For some people I hear it includes anger, irritability, etc. Maybe I had a touch of that the first time, but I chalk that up to the stress of starting chemotherapy.

For me it's sleepless nights, work on spreadsheets and policy (which I love), watercolor painting, writing, watching TV, sitting under a fuzzy blanket and fuzzier kitty, and knowing that the Wednesday/Thursday crash will come. Dave will come in and check on me, give me grumpy faces, warm hugs, and be there when I come back before he wakes so we can cuddle. I love him so.

I talk too much, and too fast, on Dex. Dave and my friends and colleagues minimize and diminish but I like to be careful with my words. My tongue has caused too much damage in the past. Ive got faults and I've got a dangerous ability to hurt with words and I try hard to not let that happen. On Dex though, the words pour out, and I talk more than I listen. If I’ve done this to you lately I'm sorry. I realize it's happening, but it's difficult to control.

It's mixed blessings. I told a dear friend " My watercolor game is definitely benefiting from cancer & chemo. Blessings where you find them right?"

And she replied "Right. Seize the good and hold on."

Michelle, thank you for that affirmation. I'm holding on to gratitude with white knuckled grip over here.

And the crash will come. Tuesday morning I woke up Monday night at 11:00 pm, after 2 hours sleep. Wednesday morning I woke up Tuesday night at 11:45pm, after 2.75 hours sleep. Watched a little Late Night, watercolored, and now am writing. Might get another hour of sleep/might not. Dexamethasone stimulates your adrenal gland to literally push the chemo into your bone marrow. My sleep cycle suffers for about 54 hours.

This afternoon Dexamethasone will release it's talons and drop me into a crash, and it will be catch-up time for the sandman. I will be sick to my stomach and tired and droopy. I'll make chemo face in meetings, slump around like a sicko. I'll sleep and wake and sleep and Wednesday and Thursday will be tough.

I'm learning how to not get nausea so bad. Three meals became 6 smaller meals spread out, and less to eat before bed. I still have problems with savory food. All those rich sauces I've learned to prepare are my enemy now. Lemon juice, hard candy, infused water, tea, and some kamboocha cuts the greasy poison taste and my sick stomach. I still feel poisoned but not as bad and I need less anti-nausea medicine. In the game of 16 syllable chemical meds, less is more, right?

Then Friday-Sunday I'll feel a little better each day, go back to a normal sleep cycle, and prepare myself mentally for Monday morning.

Friends help. Family helps. Dave more than helps, and writing and watercoloring and fuzzy blankets, fuzzier kitties, and lovely autumn colors help. Jam, jelly, lemon water, club soda, all those things help.

You help.

Thank you for caring and reading. I love you.